I’ve lived with asthma my entire life—and starting to wheeze, or struggling to catch a breath, can feel terrifying. Fortunately, medications like an inhaler and taking steps to avoid my triggers (cold weather, indoor allergens like dust) help me keep symptoms under control.

About 9% of people with asthma, however, have a severe form—and they tend to experience more symptoms, including increased limits on activity, greater prevalence of heart disease, and lower lung function. They also find it much harder to control the disease. In a new piece for TIME, journalist Elizabeth Millard asked a handful of people with severe asthma what they wished their doctors knew. These insights could help pave a path to better care. Among the takeaways that resonated with me the most:

• Symptoms can vary wildly. Severe asthma doesn’t always present with classic symptoms, like wheezing. That can lead to a higher likelihood of misdiagnoses or under-treatment.
• Everyday tasks can be a struggle. One woman told Elizabeth that carrying a load of laundry upstairs, going grocery shopping, or even tying her shoes sometimes feel impossible. Ideally, doctors should help patients devise plans to carry out these everyday tasks without triggering an attack.
• Research suggests a connection between asthma and post-traumatic stress disorder. Some patients benefit from working with medical trauma specialists, who can help them manage the mental-health challenges that so often accompany the condition.

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